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Wanted by Llewellyn King: Member of Congress to take up the ME/CFS cause

Sasha reports on Llewellyn King’s campaign to find a lone Congress member to do the right thing …

Llewellyn King, a well-known political journalist and long-time friend to the ME/CFS community, has made a direct call to U.S. Congress members to help us.

Posting on The Hill, a Congress-focused news blog, King has put out an attention-grabbing ‘want ad’:

capitol-720677_640Wanted: Member of Congress prepared to take up a cause.

Political party affiliation: Unimportant.

Geographic representation: Unimportant.

Fund-raising potential: Minimal.

Reward: Undying gratitude, lavish praise, thanks beyond counting.

Job description: In any way you can, draw attention to a debilitating, life-abducting disease. Work to persuade federal government medical agencies to adequately fund research for a cure.

His ‘ad’ goes on to a succinct and eloquent description of our history and current situation, and ends with:

But ME/CFS holds on for victims, forcing them to exist in a shadowy place of pain, hurt and rejection. Families are wrecked, lovers give up, and marriages are brought down by the relentlessness of the need. The caregivers suffer the burden for decades […]

Yet, for all the hurt, the principal medical research arm of the federal government, the National Institutes of Health, spends a paltry $5 million a year on ME/CFS – an indictment of institutional indifference. Without a strong congressional advocate, or a lobby in Washington, the research dollars won’t flow and hope will perish for patients.

ME/CFS is a good issue for an aspiring politician who wants to be heard and who could do real good by pushing federal government institutions toward helping the voiceless – those who can only murmur in their pain and loneliness, when louder shouters get tens of millions of dollars more research funding.

Read the full article here.

What you can do

We need to get this powerfully written call for help in front of Congress members.

To help, use this page to find your own representatives and senators, follow the links to their website for their contact details, and send them a link to the article via email, Twitter or Facebook.

The entire list of all 539 Congress members is here — and surely among so many, there will be some whose lives have been touched by this disease. There’s no reason why you can’t contact as many of them as you like, and there’s an opportunity here for forum members to work together to cover as much of the list as possible.

Llewellyn King has been our staunch ally for years now, and with his knowledge of how things work on Capitol Hill, we should take this campaign seriously and get behind it.

We just need one Congress member to take up our cause and get the ball rolling.

Let’s get going!

'I was completely lost and in the dark before I found this website. I can never express what this place means to me.' Phoenix Rising forum member

{ 29 comments… add one }

  • beaker June 16, 2015, 7:22 pm

    Previous discussion of article :
    HERE

  • Sasha June 18, 2015, 2:11 pm

    A little bump for this… hope you're all emailing your senators and congress reps… :)

  • *GG* June 18, 2015, 3:19 pm

    I've emailed my Fed Reps. Haven't heard anything back, yet.

    GG

  • catly June 18, 2015, 5:01 pm

    I tweeted my Senators and my representative. NO response as usual. I also tweeted the 21st century cures key players; Fred Upton (MI), Diana DiGette(CO) and Joe Pitts(PA). I got a reply from Diana DiGette saying that they are "working on MECFS and other diseases".

    But, I was kind of disappointed today to get this alert from the 21st century cures initiative. No MECFS organizations on the list–where is the Solve MECFS initiative?

    251 Patient Organizations Band Together for “Game-Changing” #Cures2015
    “Just as Democrats and Republicans have come together to craft a bipartisan bill that cleared the Energy and Commerce Committee with a unanimous vote, so, too, do we affirm our support of this game-changing legislation.”
    WASHINGTON, DC – Today, 251 patient organizations joined together in expressing their strong support for H.R. 6, the 21st Century Cures Act. In a letter sent to full committee Chairman Fred Upton (R-MI), Rep. Diana DeGette (D-CO), Health Subcommittee Chairman Joe Pitts (R-PA), full committee Ranking Member Frank Pallone, Jr. (D-NJ), and Health Subcommittee Ranking Member Gene Green (D-TX), the groups write:
    “We, the undersigned 251 organizations, represent a widely diverse community of patients and family caregivers with distinct perspectives; yet we stand united in support of H.R. 6, the 21st Century Cures Act.
    “This bill is based on the hard work and thoughtful recommendations of the entire health community, and we thank you for your tireless work to incorporate our feedback into the legislation.
    “This is a patient-focused bill that will advance the discovery and development of treatments, strengthen the patient voice in the regulatory environment, increase funding for the National Institutes of Health and Food and Drug Administration, and greatly improve our innovation ecosystem.
    “Just as Democrats and Republicans have come together to craft a bipartisan bill that cleared the Energy and Commerce Committee with a unanimous vote, so, too, do we affirm our support of this game-changing legislation.”
    Read the complete letter and a full list of organizations online here.

  • *GG* June 18, 2015, 6:03 pm
    catly

    I tweeted my Senators and my representative. NO response as usual. I also tweeted the 21st century cures key players; Fred Upton (MI), Diana DiGette(CO) and Joe Pitts(PA). I got a reply from Diana DiGette saying that they are "working on MECFS and other diseases".

    But, I was kind of disappointed today to get this alert from the 21st century cures initiative. No MECFS organizations on the list–where is the Solve MECFS initiative?

    251 Patient Organizations Band Together for “Game-Changing” #Cures2015
    “Just as Democrats and Republicans have come together to craft a bipartisan bill that cleared the Energy and Commerce Committee with a unanimous vote, so, too, do we affirm our support of this game-changing legislation.”

    WASHINGTON, DC – Today, 251 patient organizations joined together in expressing their strong support for H.R. 6, the 21st Century Cures Act. In a letter sent to full committee Chairman Fred Upton (R-MI), Rep. Diana DeGette (D-CO), Health Subcommittee Chairman Joe Pitts (R-PA), full committee Ranking Member Frank Pallone, Jr. (D-NJ), and Health Subcommittee Ranking Member Gene Green (D-TX), the groups write:

    “We, the undersigned 251 organizations, represent a widely diverse community of patients and family caregivers with distinct perspectives; yet we stand united in support of H.R. 6, the 21st Century Cures Act.

    “This bill is based on the hard work and thoughtful recommendations of the entire health community, and we thank you for your tireless work to incorporate our feedback into the legislation.

    “This is a patient-focused bill that will advance the discovery and development of treatments, strengthen the patient voice in the regulatory environment, increase funding for the National Institutes of Health and Food and Drug Administration, and greatly improve our innovation ecosystem.

    “Just as Democrats and Republicans have come together to craft a bipartisan bill that cleared the Energy and Commerce Committee with a unanimous vote, so, too, do we affirm our support of this game-changing legislation.”

    Read the complete letter and a full list of organizations online here.

    Just breaking this up to make easier to read :)

    GG

  • PNR2008 June 18, 2015, 9:48 pm

    May I write to Llewellyn King on my experience with my Congressman's office regarding another matter and ME/CFS came up? PNR2008. Thanks

  • Kati June 19, 2015, 12:51 am
    PNR2008

    May I write to Llewellyn King on my experience with my Congressman's office regarding another matter and ME/CFS came up? PNR2008. Thanks

    Mr King is quite keen to hear from patients. It doesn't hurt to try.

  • Sasha June 19, 2015, 12:56 am
    catly

    I tweeted my Senators and my representative. NO response as usual.

    Still, you tweeted! Sooner or later, someone's going to hit paydirt with the congressperson whose life has been touched by this disease and they're going to get interested…

    I also tweeted the 21st century cures key players; Fred Upton (MI), Diana DiGette(CO) and Joe Pitts(PA). I got a reply from Diana DiGette saying that they are "working on MECFS and other diseases".

    Interesting – I hadn't been aware of them. For those who don't know, it's a cross-party group in congress who are trying to get an act passed to make sure that regulation doesn't slow down the process of bioscience. Good to know we're on the list. It would be interesting to know more about who is representing us in that, and what they're saying.

    But, I was kind of disappointed today to get this alert from the 21st century cures initiative. No MECFS organizations on the list–where is the Solve MECFS initiative?

    But didn't the CAA become Solve to leave advocacy behind, at the request of patients? I think they're damned if they do and damned if they don't take part in advocacy, at the moment.

  • Sasha June 19, 2015, 1:00 am
    PNR2008

    May I write to Llewellyn King on my experience with my Congressman's office regarding another matter and ME/CFS came up? PNR2008. Thanks

    I'm sure he'd be delighted to hear from you! :thumbsup:

  • catly June 19, 2015, 6:37 am
    Sasha

    But didn't the CAA become Solve to leave advocacy behind, at the request of patients? I think they're damned if they do and damned if they don't take part in advocacy, at the moment.

    I think many of the organizations on this list are research organizations representing specific diseases. I'm not sure if they are also advocacy organizations.

    The bill that has passed is very broad and includes funding an additional 10 billion dollars to the NIH over 5 years.

    I have a thread on the 21st century cures initiative that I will update when I get a few minutes.

    It kind of upsets me that we don't have representation front and center like some of the other disease based groups.

  • Bob June 19, 2015, 9:46 am

    I've just been reading up on the bill that's going through congress. For anyone not familiar with it, they are increasing NIH funding by 3% above inflation for the next few years, plus, as @catly says, an additional $2bn a year will be provided which is earmarked for an innovation fund. So, tightened belts at the NIH will no longer be an excuse for failing to fund ME research.

    There's a good article about it here, for anyone interested:
    http://www.nejm.org/doi/full/10.1056/NEJMp1506964

    And these are some extra details re funding…

    Importantly, the bill (Title I, Subtitle A) proposes to increase funding for the National Institutes of health, starting with $31.8 billion in 2016, and increasing to $33.3 billion and $34.8 billion in 2017 and 2018, respectively. NIH is presently funded to the tune of $30.3 billion.

    In addition, the bill establishes what is to be called the "NIH Innovation Fund," which would be funded with $2,000,000 [should be $2bn, not $2m] each year from 2016 through 2020. The innovation money would be used to advance several as-yet undefined programs, including ones supporting precision medicine and "young emerging scientists."

    http://www.raps.org/Regulatory-Focus/21st-Century-Cures-Act/

  • Sasha June 19, 2015, 10:20 am
    Bob

    So, tightened belts at the NIH will no longer be an excuse for failing to fund ME research.

    I've got a massive THING :devil: about this issue of tightened belts ever being any excuse not to give ME its fair share. It's no excuse now, and it never has been. Our share is minuscule compared to what MS, for example, gets. If the NIH pie got cut by 90% tomorrow, we'd still get a huge increase in the ME funding pot if we got our fair share in proportion to the number of patients and the severity profile of the disease.

    Rant over… :angel:

  • Bob June 19, 2015, 10:26 am
    Sasha

    I've got a massive THING :devil: about this issue of tightened belts ever being any excuse not to give ME its fair share. It's no excuse now, and it never has been. Our share is minuscule compared to what MS, for example, gets. If the NIH pie got cut by 90% tomorrow, we'd still get a huge increase in the ME funding pot if we got our fair share in proportion to the number of patients and the severity profile of the disease.

    Rant over… :angel:

    Yes, I totally agree. It's not a valid excuse for not funding ME. Rant fully justified!

  • Sasha June 26, 2015, 4:16 pm

    @searcher, did I read somewhere that #MEAction had done something with Llewellyn's campaign?

  • catly June 27, 2015, 12:45 pm

    I did another round of tweeting this article yesterday to my usual list of congress people snd representatives.

    Basically I tweeted the link and asked "Can you help?"

    And I got a reply back from Morgan Fairchild stating she would try!

    I do hope she continues to say involved in MECFS, she knows many influential people and has done a lot of advocacy work.

    Thanks Morgan, in case you read this!!!

  • Sasha June 27, 2015, 1:11 pm
    catly

    I did another round of tweeting this article yesterday to my usual list of congress people snd representatives.

    Basically I tweeted the link and asked "Can you help?"

    And I got a reply back from Morgan Fairchild stating she would try!

    I do hope she continues to say involved in MECFS, she knows many influential people and has done a lot of advocacy work.

    Thanks Morgan, in case you read this!!!

    Is she a congress person?

  • Liz Willow June 27, 2015, 3:13 pm

    @Sasha, #MEAction has, indeed, set up something that makes it easy to send King's blog to Congress.

    Because links are often considered potential viruses, they are often not opened by Congressional staff or members.

    #MEAction suggests copying and pasting the text of the blog into the Congressional contact forms.

    http://www.meaction.net/2015/06/04/…ten-disease-a-job-for-a-lone-congress-member/

    Of course, if anyone has the email addresses of staff members, it can't hurt to cut and past the text of the blog into an email to them.

    P.S. Morgan Fairchild is not an elected representative. Solve ME/CFS Initiative organized a briefing in Congress with Morgan Fairchild as a spokesperson (she apparently has or had the illness).

  • Sasha June 27, 2015, 3:31 pm
    Liz Willow

    P.S. Morgan Fairchild is not an elected representative. Solve ME/CFS Initiative organized a briefing in Congress with Morgan Fairchild as a spokesperson (she apparently has or had the illness).

    I remember that, and being impressed with her presentation at the briefing. Congress person or not, she seemed a great asset! I wonder if she knows any congress people she could persuade to take us up.

  • beaker June 27, 2015, 4:06 pm
    catly

    I did another round of tweeting this article yesterday to my usual list of congress people snd representatives.

    Basically I tweeted the link and asked "Can you help?"

    And I got a reply back from Morgan Fairchild stating she would try!

    I do hope she continues to say involved in MECFS, she knows many influential people and has done a lot of advocacy work.

    Thanks Morgan, in case you read this!!!

    I retweeted her(Morgan's) tweet to all members of various House and Senate health, science and appropriations committees.
    ( too long to list them here) as well as House and Senate leaders– 11 retweets in all. I thought perhaps her name recognition would garner a second glance. Which is why I chose to retweet instead of tweet it on my own ( I did that on my own previously but only to one committee. This is much more thorough list)

    If you are on twitter and go to my reply account : https://twitter.com/beaker1986/with_replies
    scroll down a few posts ( some of us were chatting last night : )
    you can easily see all 11 in a row.

    It would be great if you retweeted to same or favorited or cut and pasted the names off my tweets and sent it to those Congresspersons on your own. The names/hard part is done !
    Took me quite awhile to look them all up — Please use the names !! : )

    If you want later ( eyes crossed today ) I can try and list the committees and links for them.

    It needs more than one voice.
    Perhaps if we hit all these folks on the pertinent committees one might actually read about it ?

    If you don't tweet you can still use this info and help ! go to twitter and click on their names on my tweets. Most have links to their own websites which list other ways to contact them. Or wait and see if I can get the other list together. May be a few days.

    ~~~~~~~~
    PS and of course send to your own reps.

  • Denise June 27, 2015, 4:10 pm
    Liz Willow

    @Sasha,

    P.S. Morgan Fairchild is not an elected representative. Solve ME/CFS Initiative organized a briefing in Congress with Morgan Fairchild as a spokesperson (she apparently has or had the illness).

    I had not heard about an SMCI/Fairchild briefing in Congress – I had only heard that they were supposed to meet with Tony Fauci. I wish we were provided details of what transpired in these meetings.

  • beaker June 27, 2015, 4:16 pm
    Denise

    I had not heard about an SMCI/Fairchild briefing in Congress – I had only heard that they were supposed to meet with Tony Fauci. I wish we were provided details of what transpired in these meetings.

    I think it was the meeting she was referring to. No testimony to Congress when it was in session. But there were members of Congress there.

    ETA LINK about meeting. It was called a briefing. Hence the mix up.

    On March 25, the Solve ME/CFS Initiative will host a briefing on the Institute of Medicine report in Washington, D.C. The briefing, which will include media, congressional leaders and executive branch decision-makers, is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.

    The briefing will feature three speakers:[​IMG]

    • Morgan Fairchild, Actress, Activist and Former Patient
    • Dr. Ellen Wright Clayton, Chair of the IOM Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
    • Carol Head, Solve ME/CFS Initiative President/CEO
  • catly June 27, 2015, 4:53 pm

    Morgan Fairchild could be the "celebrity" advocate we've been hoping for. In addition to having had MECFS, she reportedly has a deep interest in virology and is known as a major AIDS activist–I think she did testify in front of Congress on AIDS.

    She seems to have taken an interest in helping MECFS patients–supposedly, she "knows" Fauci at NIH and was supposed to have met with him after then IOM report.

    She may be able to get us some congressional traction and/or attention with NIH.

    NOTE: I'm writing all of this from memory so fair warning that I may be recalling incorrectly.

    But regardless, it would be great if PWME reach out to her to thank her and encourage further involvement.

    As for my congress people and my rep in NY–I give up on them and won't be voting for them in the future, for any office.

  • catly June 27, 2015, 5:00 pm

    @beaker Thanks for retweeting–I retweeted all of you tweets:)

  • Liz Willow June 27, 2015, 6:53 pm
    Denise

    I had not heard about an SMCI/Fairchild briefing in Congress – I had only heard that they were supposed to meet with Tony Fauci. I wish we were provided details of what transpired in these meetings.

    Attendance at the briefing was by invitation only and the location was kept secret.:cautious:

  • Denise June 28, 2015, 5:46 pm
    Liz Willow

    Attendance at the briefing was by invitation only and the location was kept secret.:cautious:

    I goofed and I apologize.
    I have been reminded that the "congressional briefing" was the invitation-only DC briefing held in March that I actually watched the livestream of.
    I think what happened is that I read "congressional briefing" and in my mind pictured a big meeting with many congressional officials and staffers rather than the SMCI meeting that had just a few staffers in attendance.

    (Has anyone heard what transpired in the meeting with Fauci?)

  • catly June 29, 2015, 9:24 am

    I haven't heard anything about the meeting with Fauci, would have been nice to get some feedback.

  • Nielk July 21, 2015, 8:10 am

    MEadvocacy.org has created an easy one click letter that US citizens can use to sen llewellyn King's blog directly to their congressional representatives. Just input your name and address. Three letters will be automatically generated and e-mailed to your two senators and house representative.

    Let's try to reach every member of congress!

    http://www.meadvocacy.org/tell_congress_we_need_an_me_champion

  • Sasha July 21, 2015, 8:20 am
  • radicchio4497 November 24, 2015, 7:45 am

    has anyone tried flagging down any of the politicians whoring for votes this cycle? seem to remember someone getting a good question in at a townhall some years back. spoke to a congressional aide years ago and apparently no one reads emails either although x number on a specific subject will raise awareness.